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Over Freakin Whelmed, AGAIN.

blueroses

Posts: 527
Joined: Jul 2008

Feb 16, 2009 - 1:11 pm

Not going to go into the whys of why I am so overwhelmed YET AGAIN, most of you have read my woes of a lodged kidney stone they want to drag out and other medical surgeries and procedures they are threatening to do. One of the confusing aspects of my situation is that because I have had too much medical intervention in my 20 years since diagnosis and so because of that I have become a super Wuss, unable to do even dentistry without being knocked out. Now that there are several procedures I can't keep getting knocked out for each of them so how to choose? I don't know how it happened but it has just all piled up at once. Now on top of each one of these prospective assaults I am dealing with being overwhelmed as well - which as most of you know is an assault all of its own. I am frozen. Can't seem to make one decision that sits right before second guessing myself. Cancelled another specialist's appointment this morning because of heart arythmias I was having but was relieved to not have to start yet something else surgical - which it could well have been. One thing after another and none go away completely, traces are left - large and small of each and everyone along the way. I know you all know, all too well, what I am talking about. Luckily none of mine, thus far, are life threatening situations but the overwhelming nature of it all is just getting to me. Hugs. Blueroses.

I am so sorry that you are overwhelmed. Is there some way you can focus on just one thing~to make things more manageable in your life? I wish that I could give you a hug! Vent all that you want we all love you and are pulling for you. Pnktopaz10

Oh well we all get to this point at some time or another. I don't know what to focus on first as there are common decisions that have to be made like anesthesia and all, different timetables of specialists - all kinds of things. But I am going to make a list tomorrow of everything that has to be done and it has to start with my cardiologist so hopefully I can get in to see him asap but that's part of the problem, getting to see specialists as you need them in the right order. Maybe putting it all down on paper will make things clearer. Haven't been feeling that well today so will tackle that tomorrow. Thanks for your ideas and support. Love, Blueroses.

I remember once shortly after my divorce when I was overwhelmed with what seemed like a million different problems and decisions I did not feel equipped to make (i.e., son dislocated knee; friend borrowed my car & wrecked it; well went dry; furnace stopped making heat; on and on; every day something more heaped on the pile!!) This may be silly, but I took a little PostIt note and wrote, in my tiniest handwriting, a list of all of my big overwhelming problems. Somehow, fitting them all on such a tiny little piece of paper made them all seem small. And seeing them all neatly listed made me feel more in control.

Looking back, comparing what seemed like overwhelming problems at that time with the challenges of fighting for my life that I live with today, I think that maybe my long list of overwhelming problems really DID belong on a tiny scrap of paper, commiserate with their real weightiness in the grand scheme of things. I'm not minimizing your worries, Blue, just suggesting that maybe you can make them seem smaller with my little trick.

Actually that is what I came down to, make a list - and for the very reasons that you mention but I didn't think to make the writing small as you suggest - good suggestion. In comparison to what our lists would have looked like prior to cancer would be interesting indeed. Wouldn't it be amazing to have started lists like that, in general, all through our lives then read them back down the road to see how far we have come? Interesting to think about how those lists would have or would not have developed. Huh. No one can minimize anyone's worries, they are what they are, and to each person - no matter how trivial or minute they are to another, they are what they are to the person experiencing them. I have no idea if that made any sense but so early in the morning I am just thankful to be sitting upright, lol. Thanks for your great idea Linda. Hope this response finds you feeling better than the day before. Blessings, Blueroses.

I am sorry about your frustration and I hope things start to let up. And Linda is right. When we look at our past problems things get put into perspective. I force myself to deal with one issue at a time now. Since cancer I don't like the doctors having control of my life. Its something that is easy for us to understand and something they don't think about. But I guess its worse when my pile of problems grows and there is no way to fix it. You do have the options of getting something fixed. Possibly making your life a bit better. And that is a good thing in our world of things that can't be replaced, fixed or treated. Small steps are better than no steps Blue. As I sit here at my computer all I have to do is turn my head and see a large plastic box full of my medical records, insurance forms, disability forms ect. That box of records is like a monster to me that I can't get out of my home. Make your lists today and someday you can put them into a box and forget about them. Bless you Slickwilly

I was just getting into major procrastination about making a list til I read your post here, grrr, now I actually have to do it. lol. Well I did get a couple of things accomplished but procrastinated the main issues so I will do the list now. Sigh. This is where being forgetful would really come in handy. lol. Later Slick. Blueroses

I too get overwhelmed but guess we make that list and take one task or priority at a time. Does the Drs say anything about your waiting on procedures because of your rapid heart? I am lucky that the Drs let me help make decisions on my treatments. They will say if I have had too much or will tell me their opinion then I will say can I use this it seems the best at this time or whatever and Dr says you know your body. And yes tomorrow I will be starting Etoposide and in a couple weeks for the fifth time I will lose my hair. Got a wig and bandanas. I hope your frustration, Blue, is lessoned and things get better for you. A Big Hug for you.
Yea make that list. I will need one just to remember things LOL
Prayers and Hugs
Sandy

Sheeesh, keeps on coming - complications. Last night half of my temporary filling that was supposed to last 3 months came off. Sigh. Not sure if I will have to get another one put on before I have my surgery to yank the tooth or not, so frustrating. Yesterday I nearly tripped on a cord but caught myself but if I had fallen I'm sure I would have broken something the way I would have landed. It's like I am afraid to get out of bed in the morning recently. I sure won't be driving any big machinery for awhile til this patch of cwappy luck bugs off, that's for sure. Not that I ever drove or will drive heavy equipment, lol. Sounds like you certainly have your hands full too Green and your issues are so much more invasive and serious than mine - it's just the compilation of all of mine at once and multiply that by the 20 years this has been going on and I have pretty much had it with doctors. Today, just for more fun I got a letter from my doc of 25 years to say they were now charging for all kinds of things that were free here before. The start of the collapse of our free health care I'm sure - oh great. I don't have any warnings when I get sick, that's why I can't work so this should cost me more money that I don't have. Hard to function when you can't seem to cut a break. However, I continue to do things that need to be done around here and until I hear from my cardiologist all the surgeries are on hold so that's one decision made. One break, is that too much to ask? Sigh, oh well. My prayers are with you on your treatments soon, man I lost my hair twice and it was just so hard on me, you must be so sick of it all but you know it will grow back - I know that isnt much consolation right now but just know that we are all there with you, every step of the way, on this discussion board. Hugs, Blueroses.

dear blueroses,
I can very much relate and empathize with you. And I'm sorry about your suffering. I frequently feel the same way. I'm a ten-year breast cancer survivor, but I am still on a potent Chemo aromatase -inhibitor drug, Aromasin, that I take daily. Ever since starting
that drug 4 years ago---it reduces estrogen levels in my body to near sub-human levels (!), ----I have experienced significant unpleasant side-effects, the worst for me being an exacerbation of my already existing problems with severe chronic depression.I'm scatter-brained, disorganized, have trouble getting almost ANYTHING done. However the drug reduces risk of recurrance by 50 % supposedy, ....so my choice is get off of the drug and possibly die, or suffer the debilitating side-effects.

At my oncologist appointment a few days ago i learned that my hip bone density is "severely" reduced compared to just a year ago, so now they want to start me on I.V. bone builders. I look like a young middle-aged woman, but I have the bones of an 80-yr old---oh yay!

It seems like everything I have to deal with each day is negative: learning the results of a test, arranging a follow-up appointment or treatment, counting pills, taking pills, filling out forms, feeling over-whelmed by all the paper-work I deal with, unpleasant calls from collection agencies,....etc etc.

My mother died on Dec. 14th. 2008, my father lives 1000 miles away.

I have been unemployed for THREE years.!

I have no health insurance, and cannot obtain it privately---I get refused----and as I said I'm unemployed so I do not get insurance through an employer.

I've been very depressed for the last few years, so I've alienated and lost a lot of friends; I have no husband or boyfriend, and very few friends. My best female friend was just diagnosed with Acute Myelogenous Leukemia.

I used to walk daily, and socialize, and go to movies and do things....but over the last few years, I gradually stopped doing those things.

Job-hunting takes an enormous amount of energy and persistence and I try not to feel dejected and rejected. I used to be a university professor, and my application to be a substitute teacher at the elementary school level was recently rejected (!), with no explanation, and when I called, no explanation was given and I was hung up on ! Ouch!
To follow up on that with lawyers etc., I don't have the energy for it & it's not worth it for me....I need money, not justice.

Yet, I can't just collapse into a pile of self-pity and hopelessness---I have to go ahead and deal with all of these pressing issues.

I am finally going to apply for disability, although I still want to work too...but I understand that obtaining disability takes a while, and can be a difficult undertaking...and the Psychiatric Clinic at which I had a supportive psychiatrist was abruptly CLOSED, on December 30/2008----leaving me and all the other clients scrambling for a new physician. I called and found out that the initial appointment with a new psychiatrist was over $250 !...remember I pay out of pocket. My previous, sympathetic psychiatrist didn't even really make me pay for service.

I apologize ahead of time for focusing on the negative. And I'm more than familiar with cognitive behavioral therapy techniques like reducing catastrophizing, or modifying the "fortune-telling" of negative outcomes-----but this is my take on all of that right now-----the worst IS happening !..I'm not catastrophizing, or imagining bad outcomes.....I'm living them!

I AM coping to some degree and making the effort to deal with each high-priority issue: health, finding a new psychiatrist, getting on disability, grieving the loss of my mother, trying to help my elderly father, finding a job, creating a social support network, being more active, exercising, eating right.....but it is ALL just SO MUCH !

ashado. I am Slickwilly and I sometimes come on here and try to make a few people laugh or think of things in a different way. But many of us understand what a long term illness does to a person. The vast pile of problems that cannot be fixed and the stress everytime the telephone rings. The loss of a Psych or Oncologist that we have worked with for many years. Its easy to start living in a bubble with everyone on the outside holding a pin. We all have our breaking point. If you have a doctor that says you are no longer able to work then I would try Social Security Disability. Its not something any of us want to do and it can take 16 months as it did in my case. As the economy falls apart people like my wife with two degrees, including a teaching degree are working other jobs. Michigan is closing schools each week so its frustrating. I doubt you would find many people on here that don't need money. Even with insurance the travel, Co-Pays, special diets, care products ect add up fast. We struggle to hang on to some part of our life that we had before cancer. I am 53 with a 85 year old spine and bones. So I understand waking up each morning in pain. And not wanting to move and cause more pain. Or having people say how great you look when your a complete mess inside. If you would like more information on what I faced with Social Security please feel free to send me an e-mail. I can only pray that something in your life changes for the better. Bless you Slickwilly

It did not take me but 2 months to get disability. I had worked having cancer and chemo 5 years until my Dr, now retired, said enough is enough. Got a new Dr. who is fantastic too so I am lucky. I couldn't take off work and get paid because I take chemo a lot and am exhausted only have a couple month breaks any more. Its been 7 years almost, been off work a year and a half on disability and of course medicare won't kick in until the 2 year mark. Heard they are trying to change that for now its Medicaid. The cancer center I go to is great. They sent the board Social Security drs about 2 inch folder on me and I got it. NO its not fun when your 51 and you think you should be working. But I try to help others and give some advice as you slickwilly. I start chemo today after a two month break. I wish I could take everyone's pain and tiredness away. I don't have hardly any pain just fatigue and I can eat with no problems of nausea even when taking chemo at the same time! Well clock is telling me its time to go to the cancer center.
I pray for all of us the cure is around the corner or something to help make us feel better
God Bless with Hugs
Sandy

What a well written posting. You described so many of us in almost the exact same situation after cancer or while dealing with recurrances. I know it doesn't help you to know that in some ways but it does help to validate those who others look at as whining or complaining cause we know better. On this board you don't have to apologize for focusing on the 'negative' because so much of cancer is negative and if anyone goes through it all smiling and joking and never having a negative thought then they are repressing, or at least that is my thoughts on it. I think it's healthy to vent the good, the bad and the ugly of it all and here you aren't judged, or shouldn't be, cause we have all been there, some more so than others but the reactions will be negative at some point in the cancer journey for us all.

The overwhelming nature of all you mention I deal with as well and you are so right, it seems that phone calls are always only about doctors and appointments and rules we have to live by now, blah blah blah. I too have lost friends along the way and am divorced now, well for almost 7 years actually, and the cancer certainly was part of the reason for the divorce too. To this day he has no idea how it has affected the rest of my life and during the marriage I now see that alot of the stuff he blamed me for was actually transplant related. It truly can be a big mess to a family and to those of us directly suffering from its after effects, as if that isn't enough we have to make the medical community understand as well. Only recently have they admitted that one of my chemo drugs caused my heart damage. Sheeesh.

Who knew that after treatment for the cancer in many ways that would be just the start of a whole new rest of our lives. Now that there are so many new treatments we are all living longer, and that's great but with the longevity comes many more late effects that possibly no one saw coming.

What to do about it all? Don't ask me, one day at a time, one foot in front of the other I suppose is all we can do. This site helps enourmously though as you have probably already found out. Keep telling it like it is and I assure you there are many others who can empathize with you as they have been there at one point themselves. All the best in your continuing treatments. Blessings,
Blueroses.

P.S. During your treatments did you have any trauma moments that you can identify? Reason I ask that is because I have a real sense that many of us suffer from PTSD from incidents of trauma during treatments, trauma to us like the chemo room memories or other incidents that stay with us and come back to haunt us. I don't think it's widely recognized in cancer patients and for some I am sure it exists. There are some interesting treatments for PTSD like EMDR, you can read about it if you are interested, I had the technique and managed to rid myself of two trauma memories that were bothering me daily - unrelated to the cancer in that case though. Interesting technique.

Not sure is this article is still available on this website (great cancer website regardless), but I saved this interesting snippet, since I have NEVER been offered any kind of psychological help as a part of my cancer treatment:

Cancer Survivors at Greater Risk for Long-Term Mental Health Issues It's not uncommon to associate stress with serious illness, but unfortunately, the stress may not always end when the illness goes away. A new study has found that long-term adult cancer survivors -- people who have lived at least five years beyond their initial diagnosis -- are nearly twice as likely as the general population to experience severe psychological distress. "We hope these findings will raise awareness of the psychosocial needs of long-term cancer survivors and encourage routine psychological screening of these survivors," said lead author Karen Hoffman, MD, a radiation oncologist at the Harvard Radiation Oncology Program at Harvard Medical School. "Quick, low-cost psychological screening tests are available that can and should be performed during clinic visits." Read the full article at:
http://www.astro.org/PressRoom/NewsReleases/
2008NewReleases/documents/Hoffman.pdf

Hi Linda. Your picture on the discussion boards is like a bright ray of sunshine. I am sure you have bad days like everyone else, but you rebound with a great positive attitude. So I always enjoy your posts. It still amazes me that the medical community is so slow in learning what most of us have know for years. They are still having debates about chemo and the effects on the brain. They still don't have answers for a bunch of the side effects. And of all things they can't seem to come up with a lotion or something that works for dry skin. I see so many cancer patients with skin that is red, cracking and flaking off and they have tried everything under the sun. Its just another thing that they don't need to be dealing with. I was really upset when the University of Michigan printed their cancer magazine and it stated some doctors thought chemo brain was related to sitting around and being inactive. I think many of us would argue about that idea. I guess a psych can be good for many people but I find that talking to others that have been there is the best thing for me. I am sure some suffer from PTSD. My daughter was at my first chemo treatment when I had a reaction to the CHOP+Rituxin being put into my body too fast. As my throat was closing up fast the nurses called a code on me. I was really not ready to leave this world and found out its quite hard to remain calm when you can't get a breath. It didn't make going to the rest of my treatments any easier and I think my daughter suffered more PTSD from that episode then I did. Bless you and have a good day. Slickwilly

I never heard of such a thing as someone thinking chemo-brain is caused by sitting around and being inactive. Sure exercise is good for circulation. But I worked 25 hours a week as a grocery store checker (bagging most of the groceries also) the entire time I went thru chemo plus walked at least 2 miles a day (sometimes 3 or 4 miles) back and forth to work and to the bus for my treatments, checkups, blood tests, and shots. On my days off I walked to the library and errants. I carried heavy groceries for at least a mile several times a week. At home I went up and down 2 flights of stairs (at that time I lived in a townhouse and the bedrooms were upstairs, the laundry machines were in the basement so there were 3 levels) many times per day. I did most of the housework and all of the cooking and laundry for myself and my daughter. When I look back I think, "how did I do all that?" And yet I did have symptoms of chemo-brain, no doubt about it. And still do sometimes, 2 years later.

Hi Linda, The 'duh' isn't on you it's on the medical community for being so naive as not to think that there will be psychological impacts of our diagnose, long or short term. Good grief why wouldn't a life threatening illness cause a bit of stress and possibly more? It just floors me that things like this that are so obvious are tied up in long term studies and debate. Good freakin grief. It's all about the profession not wanting to be accountable for the downside of cancer treatment. I don't want to sound like a gloomy Gus here but there is another side of cancer as we all know, and that is the side that is darker and needs to be discussed and recognized. I get the feeling that sometimes I come across as a gloomy, negative whiner but in reality I have a very positive attitude in my 20 year journey with cancer. I post alot of 'the other side of cancer' stuff because I think that society as a whole has put a happy face on the illness thereby repressing the side that cancer survivors really need to talk about - openly and without invalidation. Yes, positivity and humour, hope, faith and that 'carry on' attitude are all important but in reality that can't ALWAYS be the way it truly is, all of the time, in a person's journey with the beast. Just makes me so mad that psychological medicine isn't an obvious part of cancer treatment all over the world. Dang, sure wish I had the energy to lead that type of movement but I don't. Oh man, I think my blood pressure just went up 50%. Thanks for mentioning that article though, I will show it to the Memory Disorder Clinic where I have asked to go now for my 'chemo brain', will keep you posted. The other day when my doc asked me how old my daughter was I forgot, and for minutes on end too. Ta da. lol. What you said about long term survivors and the increased risk of psychological issues - Helloooooo. lol.
Again Linda, this isn't aimed at you, just your posting on what is a very serious area of cancer care that is far from serving cancer patients. I think I'm done now. Whew. lol. Blessings Linda, Blueroses.

I have an excellent oncologist who understands chemo brain~in fact she told me I had it~ but she does dismiss it. After reading the posts I think that she dismisses it because she does not have any answers about what to do about it. I had no idea about the negative impact of chemo and radiation. I do sort of remember someone telling me a few things but at the time it meant nothing. However, I find that there are positive benefits to chemo brain. When my hubby and I get into a dispute about something~I forget about it quickly and sometimes do not remember it for a few days. LOL. Reading books has always been one of my joys and now I can read books I read before because I do not remember them! Think of the money I am saving! I can no longer multi task which leads to many funny situations around the house~where I find things that I have started to do and never finished. Life is simpler since I retired and it took having cancer to slow me down and put things in the proper perspective. I am grateful for that. The other side effects can be dealt with~sometimes frustrating sometimes rewarding~like the weight I lost~. I do think that the medical community could be more responsive to cancer survivors and the side effects. To that end this is my 4th year o being a team captain in our Relay for Life. I just wish I could do more.
Hugs to all Pnktopaz10

Hi. Not one of my supposed health care team mentioned chemo brain to me before treatment, and no one has acknowledged it since. If it hadn't been for my Peer Support Lady who talks to me on the phone once a fortnight, I would have seriously considered the fact that I was deranged. I's nice to meet others here who have had some experience of this and actually admit it DOES exist!.

I was definitely traumatized by my hospital experience following my debulking surgery. The night after my surgery I was left all night with a call-button on the floor that I could not reach, and a non-functioning catheter, unable to get out of bed because I had 27 staples holding together a fresh 9" belly incision. (They'd check my vitals, make a note on my chart that the catheter didn't seem to be working, then go, as I drifted in and out from my anesthesia.) I stayed one more night, unhooked from my IV and my catheter removed at my insistance, in a CHAIR instead of the bed because I didn't TRUST anyone to come help me go pee and wanted to be personally mobile. Two nights of silent weeping and then I checked myself out of there with no bowel function, projectile vomiting all the way down the hall and out the hospital doors to my poor husband's car.

I have internal vaginal radiation coming up soon in my treatment regime. I don't know any woman who has had that degradation and humiliation who wasn't traumatized by it and who doesn't weep at the memory.

And I've witnessed the trauma of people who always get very sick from their chemo, crying as the bags are hung for yet another round.

Cancer treatment is no walk in the park. It's do-able, but we'd all be fools if our 'game face' was real 24/7. Just knowing that you may very well die, facing that, is pretty darn traumatizing, even though of course people without cancer will also die. But most don't look death in the face like we do, accepting but hopeful.

I guess if we could afford to send our Doctors on a Bogus Las Vegas trip for a 10 minute seminar we would have better treatment. But we don't have the money to compete with the drug companies. I can't even count how many times I have been at my GP's office when a drug company rep has walked in with his large sample bag full of free offers. Nothing is free! Nobody offered me free chemo at $16,500 each trip. Or Radiation at $1500,00 each day. I could of stuck my head in the microwave I guess. We proubly know more about micorwave exposure to the head than we do the side effects of cancer treatment. Just look at all the warning labels. I didn't see one warning lable on my chemo bags. Don't get me wrong here. I am glad I was saved by modern science. But after so many years of this world dealing with cancer I sometimes feel we are in the stone age. They can send us off to a psych that does not have a clue about what we are dealing with and they feel better. The world will change when I can put wires on my head that are attached to my doctor and he can feel what I am going through. He would proubly say "holy crap, how can you live like this". Only because I know God has a bigger plan for me and I can only hope it does not involve the medical profession. I will get down off my stump now. Slickwilly

Hi Slickwilly
You are so right about the doctors! You would think that as much cancer as the specialists see every day that there would have more knowledge and empathy. It is hard enough when your friends and family do not understand but it is frustrating as all get out when the doctor does not know more or understand. When I was going through one of rough parts I was asked if I wanted to see a psychiatrist.
I said not~ I am dealing with cancer and unless you send me to a dr who has had cancer there is nothing to talk about. That was the end of that conversation. What I have learned is that even if the dr tells you what to possibly expect, it is not real until you experience it. It is just a bunch of words. I am cancer free but not side-effect free. It is something that I can live with and I would have still gone through chemo and radiation but it certainly is not for the faint hearted. This too shall pass is my mantra~something that I might say to myself many times during a bad day. I say stay on your stump and let the medical community know what is needed. Perhaps we could get a grass roots effort going about education for doctors and nurses and everyone else that comes in contact with cancer patients. I have no idea how to do it but I now it needs to get done. Hugs to you Slickwilly! Pnktopaz

I talked to nurse giving me chemo and she said my sugar was a little high and that yes sugar does increase the cancer. I noticed I stay away as much as possible, but I have been eating my nephews homemade cookies and brownies and my sugar is high and my count is the highest its been. when I went on low carbs my count got better and sugar down so I am sure it does do something bad. My count is highest its been ca125 is 18000. 0-35 is normal or under a 100 for some women. anyway I said how about sugar substitute she said its chemical and thats why there is so much cancer because foods have a lot of chemicals now days. Same ole eat fruits veggies and lean meats. So I will try to not eat sugar and buy the wheat pasta. She did say knowing I like dark chocolate she said thats what would be best for a sweet tooth. DArker has less sugar and the cocoa beans are good for you. Guess we all know its just bad eating habits. Had my second chemo today and tomorrow my third then three weeks off then chemo again. Dr. said its hard to stay away from foods with chemicals and of course chemicals in the air too. But we do what we do and whatever. No, sugar does not cause cancer it just may increase it. so I will see what happens cutting down. Of course our dear steroids cause sugar to go up so there you are. Just a little FYI for more wonderful info. Yes eating right and exercise is best even tho even some that do still get cancer which may be a gene thing or whatever your body does or does not tolerate but I am going to try to do better my tumors are still small but got to get the cancer count down too because thats the fluids that can cause the tumors. HOpe I haven't bored you with what you might already know. Head steroids and mind going a hundred miles a minute LOL
Prayers and Hugs
Sandy

Hi Sandy. I figure your awake as your on steroids. I would not sleep for the first three nights after chemo. I also had the sugar problem during my chemo. I had to switch from my normal pasta diet to grilling chicken breast on my foreman grill. A little lemon pepper helps. Or I would grill the chicken and add it to a stir fry with veggies and rice. I also cooked liver on my outside grill to get my iron up. For a treat that was fairly healthy I melted down almond bark by putting a pot inside a pot of water. Then I added unsalted peanuts and coconut. Pour it onto wax paper and put it in the fridge to set up. Yes Slickwilly can cook. I also do dishes, laundry, make the beds and clean the carpets. If the medical bills keep coming I will put myself up for sale. Bless you all Slickwilly

Well aren't you just the Man of the Year. lol. Nice to see a man do his share around the house, good boy. lol. I think not sleeping after chemo is pretty common I think, I don't remember much about all my treatment with chemo and radiation except for a few trauma scenes but I do remember being terribly sleep deprived and I had two young children at home and a scattered spouse so I was still doing the majority of the parenting then as well. Sure isn't easy on no sleep for weeks at a time. I had prednisone too at the end of each treatment day which also contributed to the sleeplessness. They found out finally, a nurse figured it out, part of the reason for my 'no sleep' was that the chemo had put me into premature menopause so that didn't help the sleep patterns either. I remember too that when I was first diagnosed I drove myself near crazy with all the info on what to eat and what not to eat but in later years I got into a more reasonable space with it all and just try to eat as well as I can. If you worry too much about what to eat and what not to eat then the worry becomes yet another issue so balance is the key, to me anywho. Balance is always the key in everything I think and I have heard may well be the reason for cancer at the root of it all, imbalnce in something or many things in our lives - excess. Thought that was an interesting theory. Hope this comment finds both you Sandy, and you Slickster having a good day today. Hugs, Blueroses.

There is alot of work to be done by survivors to educate docs in many aspects of cancer,emotional issues at the top of the list, in my humble opinion. I think that if we each can find just thatlittle bit of extra energy when we go to see our docs to raise some diaglogue as to what we need as survivors then I think gradually the medical community will change in how it deals with us and what more they can offer, in the area of support especially. Today I am going to see one of my cardiologists with new symptoms I am having and my confusion as to anesthesia in my 2 surgeries coming up and will take with me a copy of that article Linda was talking about in another thread dealing with severe stress and long term survivors. Some docs are more open to this than others and some just roll their eyes at anything from the internet but if you present it properly most will listen. Sometimes in the long list of questions we have about ourselves we just don't have the energy to bring up issues we have as survivors but if we all only raise the issue once then think how that might cummulatively make a difference?

Oh Pink I so agree too with your phrase about cancer treatment not being for the faint of heart, in exchange for being given our life back there is indeed a big price to pay in after effects for a great many of us. Have a good day Pink. Blessings, Blueroses.

I read your post Linda and boy did it sound familiar. I too suffer from many trauma scenes experienced in treatment as I am sure most did to some extent. Poor care from some nurses left me feeling so vulnerable at night especially when I was in hospital with treatment but I always seemed to rally enough to demand another nurse put on my case or make sure that whatever wasn't being done right was corrected in some other way. I really felt God's presence in the hospital as when I was feeling the most vulnerable with no energy and much pain I would get these bursts of strength, just for enough time to deal with the emotional negatives that I had to. It was really amazing.

I remember one incident where a nurse on duty with my case one evening consistantly kept putting off giving me my pain meds on time and to boot she was so sloppy with my care that during the night I awoke to find my IV had gone interstitial (meaning it came out of the vein and the fluid was pooling under my skin). That smarts I can tell you. I rang the bell, after making many failed attempts throughout the night to get her to check on me more, and demanded that a new nurse be put on my watch. They argued but I got a new nurse and I drifted off to sleep after testing her out for better care (which she passed) knowing that I would be looked after properly now. Again I got that shot of energy from above to help me deal with the shoddy situation at that time. I have over 2 dozen trauma scenes related to my cancer treatment, I'm sure many of you have the same over the years. It's a real shame that this area of treatment is not yet recognized as it well should be. I just want to say here that I had mostly fabulous nurses, this one was a negative exception, but truly they did more for me than all my doctors put together I think in getting my care to where it needed to be with the docs in many cases. Nurses are so critical to our care as most of you well realize, they are so undervalued by the medical community from what I have seen. Take care, Blueroses.

I think it's few and far between who, in the medical profession, will today use the words chemo brain but it's coming because they are now totally admitting to certain damage situations from cancer treatment. Only 2 years ago did my cardiologist use the phrase 'adriamycin induced cardiomyopathy' which means chemo damaged my heart (that specific drug - adriamycin). I nearly fell off my chair as years before when I first started having other health problems, including heart ones, after treatments my bone marrow transplant suggested I see a shrink. I was feeling sooooooooooo horrible that I broke out in tears, called me some choice words, and went running out of the examining room. No idea where I got the strength to do that but I felt good that I got it out, it was patient abuse as far as I was concerned. Now that was 18 years ago but from some postings I have read, alot of that type of thinking by some docs still goes on, grrrrr. It's getting better though as we long term survivors press on, there are so many of us now (which is encouraging) who are having so many like symptoms, they can't ignore it all any longer. Their is indeed strength in numbers. Docs today do know that treatment can cause cognitive issues, it's a start. Hugs Tash, Blueroses.

Sheesh I could write a book about this subject and in dribs and drabs on this site I have talked about it a great deal for obvious reasons but what I wanted to add here is that there is a real problem with how it is perceived to the docs, when we bring up the subject of our after effects that is. For many of them, as soon as we tell them about a symptom and that we feel it could be due to our cancer treatments, many feel we are using our treatments as excuses for symptoms that can also be caused by regular health problems others have who don't have cancer. Know what I mean? Age is a big one. If you say to your doc that you are having cognitive issues or feel you are getting much more forgetful, and I find this is a bigger problem from what I have heard from women in particular, they will say 'well you aren't getting any younger", thank you doc that helped. lol. I am not saying there isn't most likely SOME element of truth to that in some cases but most of us can feel when a symptom is not a more common kind of symptom, we just KNOW something is not right and is most likely related to recent treatments. I don't know if I am making myself clear here, hope so. I have only had one cup of coffee so far, lol.

I don't know how to deal with this type of issue more effectively, there are many books written on How to Talk To Your Doctor - it's become an art now it seems, lol. However I have found that if you have your notes and thoughts in order when you go in to see your docs and you don't act like a know it all to them about your after effects - perhaps take some well respected material with you for them to read at their leisure on the issue (from a medical facility well respected is the key - like Dana Farber etc.) and are polite about it all most will usually listen if you keep it brief.
I need more coffee. lol. Blessings, Blueroses.

Good morning all. Blueroses you make a very good point about having notes and thoughts in order before speaking with the doctor. While I was going through chemo hubby would have notes of things to ask~mostly because I could not remember a thing! Chemo brain, prednisone induced insomnia and agitation were biggies. What I am finding is that not only do we need to educate our doctors but our family and friends as well. People think that once you have finished the treatment you should be fine. We all know that this is not the case, which is one of the reasons that this board, and all the people on it are so important to me. I do not really like to talk much about the aftereffects of cancer with my friends because they just do not understand. Good days, bad days and those in between. Ah well, I too have only had one cup of coffee Blueroses... hugs, Pnktopaz

We have all delt with many problems during cancer or while helping others with cancer. And I was quite lucky in many ways as I had insurance, sick leave ect. But the fact is most people in this country are stretched to the limit with finances. Even with savings and being ahead of the game a major illness will drain a family fast. I have to wonder how many people living on the street once had a family and lost it to a major illness. Let alone the Veterans that come back from war disabled or with PTSD and quickly find their lives ruined. I am not a supporter of big Government by any means. But it seems to me that if each person that has a home, vehicle, credit card or any type of loan paid $5.00 a year for each item into a long term illness fund life might be a bit easier. The fund would not pay off the debt but only the interest each month. The creditors would be put on hold once the illness is verified. As only the interest is covered there would not be as much abuse as the debt would still be there after you have recovered or been put on disability. Imagine being able to deal with cancer without the phone ringing off the hook. Not having to give up treatment so your family can collect your insurance. I have seem far too much of this and it breaks my heart. It might not be the perfect answer but its something to think about. Bless you all Slickwilly

My brother was a viet nam vet and just finally got a small disability check after what 35 years for his loss of hearing and depression and whatever else. But yes if we could just do the fund thing then maybe I wouldn't have to take more then half of my disability check and put it on medicaid spend down of over 700 dollars. And I could take the chemo pill instead of the drip in IV. I have the highest count and I have been eating sugar so even tho it doesn't cause cancer it increases the tumors and fluids so I am going to try and live without it so much. Thanks for the ideas on the meat. I am going to get fresh fruits and veggies from Amish and go to meat markets for meat instead of dyed meat at grocery store. Try to eat better and see if that helps count to go down. Bad habits are hard to quit. That liver sounds good on grill. I have high cholestrol but could eat it once or twice a year I suppose. I use to lightly fry it then cook it to make a broth gravy with onions. The chicken my mom makes is no skin of course but you roll the skinless chicken in egg and milk then crunch up some cornflakes real fine and roll it in that and bake it and its like fried chicken but no oil or skin. Just a little FYI. I don't usually talk alot or type alot but steroids are like making me like energizer thoughts, even if I am not too clear on thinking. Well got to go get my martini then I will have 3 weeks off then go back. All of you take care
Prayers and Hugs
Sandy

Someone else on one of these Discussion Boards coined the term "Hamster Days" for those pre-chemo steroids-induced sleepless nights and days of artificial energy. I get that with every single chemo round, and I DO feel like a nocturnal creature running endlessly through the night on my little wheel going nowhere. The steroids also make me unusually aggressive in conversations, interrupting people and spouting out my opinions tactlessly, in an obnoxious way that isn't like me the rest of the time. I try and use the fake energy of my Hamster Days to clean my dirty home before my white-count drops again, making living in my own untidiness (AKA squallor) a health hazard for my immune-deficient body.

Regarding nutrition: Life-long, I have always eaten a high-fiber, whole-grain, organic veggie diet, and so being on my 'cancer diet' isn't that much different except that I now drink prune juice in the evening instead of having a glass of wine (boo!) and order tomato juice is restaurants instead of an iced tea. But the real change I see is how UNFORGIVING my body is now for any indulgence in my diet. Like when the grandkids are here and we go out for donuts for breakfast (instead of my regular bowl of Fiber One) and for hamburgers and ice cream for lunch (instead of my regular daily spinach salad), I now experience constipation immediately for these diet transgressions. A single glass of wine for a special occasion makes me feel as hung over as if I'd been on a binger. The fact that I got cancer even though I have never smoked, have never been overweight, and always eaten right and gone to the gym daily has really thrown my poor husband for a loop. He has totally given up on the high fiber/low fat diet he adopted when he turned 50, saying "What good does it do? Look at what happened to you even though you were a poster child for clean living." I am working on him, because I NEED him to be healthy for me, but I can see where his bad attitude is coming from.

My nutritionist recommended eating live-culture yogurt every day while in treatment to help replenish the good bacteria in your body that the chemo is killing off, and a minimum of 5 servings of fruits and vegetables daily, and to stick to unrefined food. I am an organic gardener in the summer and looking forward to growing my own spinach and tomatoes again. It costs a LOT MORE to eat right.

I love your idea Slick. I would be the first to sign up and give the $. I too am fortunate that I have insurance and that I have enough sick and vacation time to be paid until the end of the year. I then retired. I worked about 1/2 hour from home and the chemo brain get in the way of driving and concentrating once I got there. After working over 30 years it was time to move on to something different. However, there are too many people who do not have insurance and I truly do not know how they do it. I look at the bill statements that come in and yikes!

Linda, I really don't believe cancer is caused by poor diet.If that were true a whole segment of the population in "starving" countries would be dead from cancer. Some of it might be caused by added chemicals, artificial sweetners, and hormones in dairy products and meats but so many people say they got cancer even though they ate a healthy diet and exercised regularly. I was one of them. That doesn't mean a person should quit eating healthy and excercising. Some health problems are caused by poor diet. So some of those a person can control. The fact is, a person feels BETTER when they live a relatively healthy life. I know I do. I'm not extreme, however. I didn't realize steriods given during chemo change one's mood. Maybe that explains some things.......But I did have a huge appetite and incessant cravings for certain foods. Speaking of chemo-brain, just today a lady (I work with the public so I don't really know her) asked me how I have been doing since the treatments, about the side-effects, etc. I told her May will be 2 years but I still have chemo-brain. She said, "some of that is getting older." I don't really think she knew about chemo-brain. I just told her that maybe getting older does not help but I definitely know I have more problems with my brain than before chemo. Looking back I feel abit annoyed at her for saying that but I bet I have said many things to people also in ignorance. Oh well. If you never experienced cancer how would you know anyway?

Sandy does your brother suffer flashbacks from Vietnam? Is he getting treatment for it or did he?
Just thought I would pass along some info if you wanted it on Vietnam vets and flashbacks. Hugs, Blueroses.

Just got back from one of my cardiologists to check on his thoughts on two anesthetics close together for my surgeries and again said it would be okay, 2 weeks apart is fine. Hmmm. Of course last time he said it was okay for my heart then I get outside the operating room and the anesthesiologist comes out and says no way he will put me under with all my health issues. Oh man shoot me now. So I got all dressed up for this appointment and came home with the same answer he gave me before despite what I said about the anesthesiologist outside the O.R. Seriously, shoot me now. Sigh. So I will go to the pre op appointment for the kidney stone dragging out and see if they have more smarts in there. Sheeesh. Got a call today and 2 more procedures have been booked. This is sure quite a run of docs and procedures, even for me. I took my sheet of paper with notes on it, got it all asked but when I was waiting for my ride forgot to tell him why I brought in a copy of the article on stress and long term survivors, sigh. Ah, he can figure it out. One day at a time, one foot in front of the other and try not to trip. Yowza. Hugs, Blueroses.

Yikes! What else can I say. I wish I could be there with you and hold your hand or tell you funny jokes when you are going through it all.
Am glad that you are getting the kidney stone taken out. I understand that those are very painful and can lead to even more trouble. The article will keep until the next time. forgetting just postpones it for a little while. here is a story for you. Really cold outside and I could not find my gloves. Searched everywhere. They are pink (go figure) and cannot be over looked. So off I go to the store to get new ones~fussing the whole way there. Went to the check out line to pay for them~reached in my purse~ up the gloves were in there. The one place I did not look! Hope that this brings a smile to your face. Hugs, Pnktopaz

Blue, I am sorry about your day and the pending operations. I do wish I could be put out for a while. I found that after my operations I would wake up and feel like a million bucks. As I am always fighting pain I just don't sleep well. Linda, I learned to hate my Predisone as my wife kept yelling at me. I would spend 3 days wound up and making noise in our attached garage. And as a friend once said "you could lick the ketchup off the door of the fridge". I gained 15 lbs during my cancer. I like your diet but agree with your husband. Its hard to beat a good hamburger. We will plant a garden again this summer. A co-worker bought two green peppers that were in a crate marked Mexico. They were put in his micorwave and sparks started flying all over. After another trip to the store and the same thing happened. So he bought some American peppers and they cooked just fine. The store manager took the peppers off the shelf. It makes a person wonder about heavy metal poisoning hey! I love my garden, I love my garden. And also the berries and apples my wife spends all summer picking. Bless you all Slickwilly

Wow Slick that's a scarey story about the peppers. You should have gone back though and taken some, froze them and used them on the 4th of July for fireworks - cheaper than the real thing betcha - not as dangerous to your health either, lol. Basically we were created to eat what was around us locally is my thought on the subject of food and health. I read somewhere that we should actually only eat local for a certain amount of miles around us, produce, meat and milk products. Makes sense since way back in the day before cars and other modes of transportation you had to walk to your food sources and that would only be a certain distance from where you lived so you had to eat local. I think that we have gotten much too far away from nature to be truly healthy. God had a good plan but we humans knew better - uh huh. Anywho that's my little take on the subject. Blessings, Blueroses.

That's what I used to call being put out for surgeries and procedures during the transplant, lol. Like you Slick it all would get so crazy and I was so sick of procedures (of course still am but worse now with the numbers of them adding up over time) that when I found out I was going under during a procedure it was like woohoooo a rest for the head, off to vacation land for a bit. lol. Works for me. Hugs, Blueroses.

Did you buy the new gloves anywho? Thanks for the cheering up. I am not in as bad a shape - overwhelming wise - as I was when I started thread, you know how it is this kind of phase comes and goes. What started me back to a saner moment was just plodding along and doing one thing at a time even if all the steps did depend on the one before. Most of it fell into place somehow as I went along but dates for the procedures are still hinging on my dental appt on Monday afternoon next week. The other procedure (stone) is set for March 16th but first I need to see the nurses in pre op re the anesthesia so that will be when I can ask my key questions on 2 knock out drugs in a short period of time, my heart being the worry. The thing is that it's conflicting info from the 2 cardiologists and GP and the anaestheologist that did my last tooth, the knock out doc wouldnt do the general anaesthetic and everyone else said no problem. Wish they would get their acts together and their stories straight. Anywho I am not really much further ahead but have calmed down the confused state by, like I said, doing one thing at a time and amazingly some things have sorted themselves out. Blessings, Blueroses.

Slickwilly I can relate to the energy with prednisone not only was I agitated and could not sleep I had claustrophobia~ hubby would find me sitting outside or walking in the yard all night. I logged a lot of miles LOL. prednisone is scary stuff~ my last chemo treatment the doc reduced it when I told her that my hubby and I were driving down the interstate and I wondered what he would do if I opened the door. That really scared me. Am grateful that is over!
Blue~ No I did not buy the gloves~ laughing here. I know that time gives a person a more balanced perspective but on those overwhelming days nothing is in perspective. I too do one thing at a time. If I try to do more I find things undone because I have forgotten that I was doing it. Was dusting just a few minutes ago and got side tracked and had to hunt for the duster lol. Why it was in the kitchen I will never know. I like doing the cleaning etc when hubby is not home as being sidetracked is my way of life. Then later I see that I have not finished what I started. It would drive him crazy. I think it is funny and I am getting used to it. So far I have not put anything strange in the refrigerator if hubby is the one who put the dishtowel in there. Ah the joys of chemo brain. Another thing, I have taken to calling people sweetie since I cannot remember their names. Usually their name will come to me after a while but sometimes it may take hours... I could go on and on but I had better stop here. Hope I livened someone's day! Hugs, Pnktopaz

Oh man. We have a little grocery store in the basement of our apartment complex and yesterday when I came back from the cardiologist I stopped in there to get some things for supper. They have a new debit machine where the customer puts the card in but then of course the customer HAS TO REMEMBER TO TAKE IT OUT. SIGH. Which of course I didn't do. Just realized it and the store isn't open after lunch for a few more minutes. Have been going nuts having to wait to see if it's there or some jerk stole it. It is one with a brand new chip in it so harder to use. I don't want to cancel it if he has it downstairs but he knows me and would have called if someone had turned it in. Then while I was waiting to call about the card I got my VISA card to see if there was a bank number on it in case I had to cancel my other card. Walked into another room and came back and COULDN'T FIND THE FREAKIN VISA CARD NOW. SIGHHHHHHHHH. Took me half an hour to find it, finally did though. For I minute there I started thinking, hmmm wonder if there is a mischevious ghost in here or something, lol. Whats worse chemo brain or a ghost? I'm rooting for a ghost methinks. lol. See ya, Blueroses.SIGH.

It seems we have quite a few things in common here. I have been fighting a cold and the caughing is killing my neck. Along with the rest of my body that feels like a truck hit it. So I have been on some pain killers and I hope everyone understands if slickwilly seems to be losing it. Blue your making progress with your small steps. I know that you have been through enough and I am sorry that you have to go through more operations. I hope they can find a safe option for working on you. This is not like T.V. where they remove parts, drill holes and try 10 seperate drugs to cure someone and everything is just fine at the end of the show. If Dr House was a real doctor all of his patients would be on disability with me. My wife and I went to get some food and my General Doctor walked up to say hi. He wanted to know if my daughter was doing ok with her cold. My GP is quite special. He just turned 60 years old and has been my doctor for 30 years. I was sitting in a hospital room getting my 9 1/2 hours of chemo a few years back. I was alone as most of the staff had left and my chemo took so long. My GP was doing rounds and saw me so he stopped in for two hours. Yes, he sat with me for two hours! He talked about diagnosing five patients in a two month period with cancer. Here I was plugged into chemo and my doctor was crying. I felt worse for him than I did for myself. I could not ask for a more caring doctor then the one I have. There are some people in this world that you would trust with your life. I hope you have that faith in your cardiologist Blue and know they would go the extra mile to make sure your safe. Bless you Slickwilly

Depends on if the ghost is friendly or not...lol. I hope that you got your card back and will not have to go through the hassle of canceling and getting a new one. After I read your post I thought about going and checking to see if I had all my cards but I have not used them so I am safe..or am I? Now I will need to check.

It was refreshing to read Slicks story about his GP. Sometimes we need a reminder that doctor's are human.

I am trying to eat better Linda, I found one nurse said about staying away from sugar and bad carbs makes cancer grow. I have taken steroids off and on with chemo but this time I feel bloated. I am swollen from my high cancer count but this bloating seems to be tight and as I took this chemo etopiside and the steroids. Yes I get irritated with the steroids. So if I sound short tempered forgive me. MY brother Blue only had the flashbacks a couple times but he does take anti depressents. But most of the time he is a carefree happy person who has really been here for me since my husband passed. Hes helped me with my house and getting things done. Thanks everyone for being here. I am having a bad day
Prayers and Hugs
Sandy

So Sorry to hear that you were having a bad day yesterday, we all sure can relate sooner or later. Hugs. I am so glad to hear that your brother did so well after his term in Viet Nam, so many others still suffer PTSD, he sounds like a very strong man. I'm sending good wishes to you in a prayer. Hugs, Blueroses

Yup the store downstairs had my card, dumbo for not calling me when he found it, sheesh. Some people just never think about others for a second. Anywho it's back so that's good. Hope you found all your cards in order there Pink, lol. Have a good day, Blueroses.

I too have had a GP for close to 25 years now but she never even came to visit me in hospital through the whole transplant and most of my docs run the other way if they see me in a store, not that that's happened often, all of them know how complicated my medical history is and I guess just don't want to get involved so you are indeed blessed to have your sensitive caring doc Slick. I'm jealous. I do have faith in both of my cardiologists for sure, they work through a world famous heart institute here and it was one of them that got me on this drug combo that has me better than I had been before but the atril fib is just running it's course and they don't get better unless there is surgery for it and even then it isn't a sure thing and can be life threatening. Anywho I am proceeding with baby steps and know that this won't be the last time that I get overwhelmed, hopefully next time will be easier. Nothing has really changed, still surgeries and procedures to get through, I think I have compartmentalized it all which is what I usually do when there is too much. Have a good day Slick, Blueroses

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